Guidelines Help jMRD Patients Transition to Adult Care

European recommendations for communication, coordinated care

Action Points

Two European rheumatology groups have developed the first international set of recommendations for the transitional management of young people with juvenile-onset rheumatic musculoskeletal diseases (jMRD).

Note that the recommendations advise that transition should begin at age 11 years (no later than 14) for those with jRMD, and immediately after diagnosis for those with adolescent-onset disease.

Two European rheumatology groups have developed the first international set of recommendations for the transitional management of young people with juvenile-onset rheumatic musculoskeletal diseases (jMRD).

Put together by the European League Against Rheumatism (EULAR) and the Paediatric Rheumatology European Society (PReS), the recommendations are meant to help young people from early adolescence (10-13 years) into young adulthood (20-24 years) and may be useful to a wide range of healthcare and social workers, according to Leticia Leon, MD, of the Instituto de Investigación Sanitaria del Hospital Clínico San Carlos in Madrid, and colleagues.

The 12-point recommendations stress the need for high-quality multidisciplinary care, dedicated coordination, efficient communication with all parties, rigorous documentation, and ready access to medical information. They are published in the Annals of the Rheumatic Diseases.

Leon and members of a consensus panel noted that transitional care is defined by the Society for Adolescent Medicine as "the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems. This complex process prepares jRMD patients for taking responsibility for their health issues."

The recommendations advise that transition should begin at age 11 years (no later than 14) for those with jRMD, and immediately after diagnosis for those with adolescent-onset disease.

During the process, direct communication between key stakeholders, such as patients, parents, and a member of both the pediatric and adult rheumatologist teams, is essential. The authors also called for direct contact between pediatric and adult rheumatologist teams is required before and after transfer.

They advised that individual transition processes should be planned with patients and their families and carefully documented in medical records.

In addition, every rheumatology service must have a written transition policy and a dedicated coordinator.

Healthcare teams must have appropriate training in generic adolescent care and jRMD.

The expert panel stressed the need for more evidence-based knowledge and practice to improve outcomes for those with jRMD. The authors cautioned that many unanswered questions about how to ensure best outcomes in adulthood remain, and that published scientific evidence is sparse.

"Our recommendations highlight the need for an improved evidence base to inform models of care, identify relevant outcome measures and the cost-effectiveness of transitional care programmes as a complex intervention," they wrote.

Erica Lawson, MD, of the University of California San Francisco, told MedPage Today that the guidelines "represent an optimal model of care delivery that is equally relevant in the United States, our fragmented U.S. healthcare system poses unique barriers to funding and implementation of transitional care."

Lawson, who was not involved in the creation of the recommendations, added that health insurance has been a huge challenge for transition-age youth.

"Two key provisions of the Affordable Care Act -- allowing youth to stay on parents' private insurance to age 26 and the banning of pre-existing condition exclusions for coverage -- have had a tremendous positive impact on the ability of young adults with rheumatic diseases to access critical medications and healthcare. Given the results of [the U.S. presidential] election, these provisions are at risk for reversal."

Lawson also stressed that sharing information is critical because providing appropriate care in the adult setting requires access to patients' often complex medical histories. "Facilitating provider communication through technology, such as [electronic health record] interoperability and email communication between providers, can help to bridge this gap,"she said.

Lawson shared the panelists'concern for more evidence-based knowledge, noting that outcome measures for transition need to be defined and assessed in order to optimize clinical practice in resource-limited settings. "In the U.S., demonstrating cost-effectiveness will be critical to the adoption of improved transition services for youth with rheumatic diseases," she said.

The authors also supported holistic care for young patients, addressing their medical, psychosocial, educational, and vocational needs. They called for regular assessments of disease status in the context of patients' developmental phase, life events, and personal aspirations.

"This care needs to be 'future-focused', albeit not limited to young adulthood, in order to ensure optimal well-being," they wrote.

Studies done in Switzerland and England have addressed the challenges of successful transitional care in the broader medical context, the authors noted.

Th study was supported by EULAR.

Leon and co-authors disclosed no relevant relationships with industry.

Reviewed by Robert Jasmer, MD Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, BSN, RN, Nurse Planner

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